9.26.2010

I Wonder If You Can Really See My Son

Leo and I had such a lovely day together -- a pleasant day, a day an NT kid might grumble about, running errands and going on outings. Leo was a great sport, and good company. But I suspect that we may have looked odd to anyone unaware of Leo's challenges, or who doesn't know how much effort Leo, his family, and all the dedicated professionals and educators who have worked with him over the past seven years have put into supporting him, into helping him look merely quirky rather than out of control.

So, theoretical observer, let me interpret for you, in case you are curious about kids like Leo when you see them out and about, and wonder what is actually going on with that funky kid and his or her parents. Let me elaborate for you, explain to you just how successful our boy's day was.

At the Soccer Field

We started our day accompanying Mali while her team took soccer pictures, as Seymour was at another park watching Iz play her own soccer game. We were surrounded by lots of yabbering small children. I held Leo's hand the whole time, which might look funny as he is obviously not a small child himself. Why do I hold his hand? Because it makes it less likely that he will bolt. Because noisy, swarming little kids sometimes make him skittish, and holding my hand can help him feel calm. It also prevents him from engaging in his latest stim: spinning and stomping:

While we were waiting for Mali to stop making faces at the camera, I introduced Leo to several parents of kids who knew Mali. After I told Leo each parent's name, he replied on his own, "Hi, 'Name.'" This elicited big smiles of delight from several parents who knew of Leo but had never really talked to him before, and didn't realize what a friendly, polite kid he is.

Successes:

Leo didn't bolt.

Leo didn't stim.

Leo waited with me during a non-preferred activity for 30 minutes, without getting impatient.

Leo didn't treat the small kids like the bowling pins to his bowling ball. No one was scared of him, much less hurt by him.

Leo spontaneously inserted correct names in a social greeting, with eye contact, and as an appropriate response to a social question.

What we need to work on: Spinning and stomping. I'm worried that this is an OCD behavior. It's time for us to visit his behavioral psychiatrist anyhow, to monitor his blood sugar levels and liver function (Risperdal being a black box med that requires consistent checking in) so I will ask about the behavior then.

At the Coffee House

After Mali's pictures, we went to our wonderful local, autism parent-owned coffee shop, Cocoa Java, to wait for Seymour and Iz. Leo spied bagels in the food case the moment we entered the cafe, but I asked him and Mali to sit down at a table and wait while I ordered their food. The person working the counter had a workflow pattern slightly incompatible with child patron happiness -- she handed me their donuts on plates immediately, but then went off to make my single-drip coffee before taking my money. So. I had to wait at the counter with the kids' food until the barista finished up, as any donuts I put down on the table would be inhaled instantly, and then there would be impatience while I drank my own coffee when it finally arrived.

While I was waiting, Leo asked me for bagels several times, from across the cafe, in his standard request format, "Want a bagel, please?" It might have appeared odd to another patron, my son's continuing to ask me for a bagel after I'd already told him no. But for Leo, it was a form of self-soothing and processing -- he really wasn't going to get a bagel, that blew, and he had to deal. Eventually the coffee arrived, I sat down, and we all enjoyed our coffee house treats.

Successes:

Leo waited calmly for a highly-preferred food item, without me sitting next to him, and without taking out his frustrations on the little sister who was sitting with him.

He accepted that another highly-preferred food item would not be coming his way, even though he could see it, right there in that display case.

He did not lost his shit completely and cause a scene over #1 or #2.

After a while, Seymour called to say he wouldn't be able to meet us, as Iz's post-game soccer photos were taking forever. I dropped off Mali with Seymour so he could take our youngest to her own game after Iz's pix, and drove Leo home to his session with Therapist V.

Lunch at Suraj

Seymour and the girls left for a daddy-daughter hootenanny shortly after Therapist V finished his Leo session, which meant Leo and I had the afternoon to ourselves. We immediately took off on one of our favorite mother-son excursions: buffet lunch at a local Indian restaurant.

Once we entered the restaurant, I let go of his hand so he could feel more independent. He then did a giggly happy dance -- the dance of anticipatory naan bread joy. But he wasn't too loud and it didn't last more than fifteen seconds -- if he had been genuinely disruptive to other patrons, we would have left. We've been customers since before we had kids, so the restaurant staff knows and doesn't mind Leo's quirky behaviors.

Leo followed behind me as I pillaged the buffet, asking me for naan bread every thirty seconds. I reassured him each time that he could have it -- but not until we sat down at the table. He remained calm.

Once we sat down, I tore off pieces of naan bread and handed them to him individually, usually requiring that he answer a question correctly first, such as "Who likes naan bread?" (Leo's response: "I do!")

My behavior probably appeared very odd and controlling -- a helicopter mom hand-feeding her chubby son -- yep, that family's got some food issues. But there was actually a lot of work, progress, and practicing going on, for those who knew what to look for.

Every time I handed Leo a piece of naan bread, I was dipping it in my saag -- right in front of him, so he could see what I was doing. (Saag is spinach cooked down and pureed with onions, butter, and spices. And, at Suraj, with a definite chili kick.)

As you can see, I put more than a speck of saag on each piece of naan. What you can't see, because I positioned the bread in this shot for saag-daubing display, is that every other time I handed him a piece of naan, it was with the saag facing Leo -- I was not in any way attempting to hide what I was feeding him. He ate every single piece. Happily.

He then asked for ice cream. Since dessert is included in the buffet (self-serve mango ice cream, mmmm, though I had chai and gulab jamun), I got him a bowl of the orange stuff. He ate the entire thing himself, with his spoon. His grip is still a little bit awkward (fine motor/grasp issues), but he ate all that ice cream all by himself. He even spontaneously mopped up drips! (See video.)

Successes:

Leo used the correct pronouns in answering all of my questions (and "I do!" is new -- he usually answer "me!").

Our boy with his history of eating only six food items is now eating a spicy Indian food, willingly. I will be increasing the saag amount gradually, with the hope that eventually he'll eat the saag itself without the naan.

He did not cause a scene in trying to snatch naan bread from the buffet.

He fed himself an entire portion of food using a utensil rather than his hand.

He did not bolt his naan bread, nor did he bolt his ice cream -- actions that have in the past resulting in his barfing on the table at this very restaurant because he doesn't seem to be able to tell when he's full -- or perhaps his compulsion to eat overrides his "I'm full" sensor.

Number 5 is the one we're still really working on, the preferred food compulsions. Seven years of ABA and we still need to monitor all preferred food items, other wise he'll sneak off and/or snatch and bolt them -- as he did in that SF Weekly article about him and his iPad.

Side note: I'm still disappointed in the behaviorist/SF Weekly commenter who declared Leo's food snatching a behavioral failure -- what a dick. As if ABA therapy implants an on/off switch or guarantees 100% compliance! I'm glad my mom and so many other people chastised him for being unable to look beyond that one incident and appreciate the article's lauding of Leo's many successes.

Side note #2. Leo's food snatching has spawns some interesting side effects: He's getting sneaky and plotty, which IMHO demonstrates a degree of Theory of Mind. A few weeks ago, after swimming in our pool with his sisters, I asked him to run in the house and get dressed while I spent 120 seconds closing the pool -- running in the house and getting dressed independently being what he does after every pool session. However, at some point earlier in the day, he must have spied our new jar of Nutella on the top shelf where he was not supposed to be able to reach it -- because when I came into the house, he was standing on the counter -- naked -- with the Nutella jar in his hand, scooping it into his mouth as quickly as he could. Quite the sight -- but I was laughing too hard, and working too hard on not letting him see me laugh, to get a picture.

At the Hair Salon

Leo let this lady cut his hair, without any significant behaviors. He squawked and fidgeted a lot, initially -- which I'm sure drew quizzical glances from the other patrons -- but once I brought out his iPod touch and held it in front of his face so he could watch Ben 10, he settled down. The stylist was then not only able to chop off his luxuriant glossy curls, but she was able to buzz a clean line around his ears and neck.

The result is quite striking, I think -- don't you? Handsome boy! Though I do cry quietly every time we have to cut off those beautiful curls.

Successes:

Leo did not scream and cry and try to escape from the stylist's chair.

He did not need to sit on one of the playground-style kiddie chairs. He sat in a regular chair.

He did not require a lollipop or any other food item to comply.

He did not jerk his head around so violently that his hairline looked badger-chewed.

He was able to focus on a video during the session, and sit extra-calmly.

Leo, with our and his team's support, is still working on some of his issues -- the food bolting especially (we're going to be formulating another new approach, both at home, and with his teacher at school). But I hope this rundown of Leo's today helps some people appreciate that, when you see a kid like Leo out and about town, perhaps instead of thinking, "Why is that kid behaving so strangely," you could ask yourself, "I wonder just how hard that kid is working."

Because I bet you anything, those quirky kids -- they've worked their asses off, just to be able to leave the house and appear in public. In Leo's case, the goal isn't even to blend in, but rather to be able to grocery shop, eat in a restaurant, go to the park, or get a hair cut without disturbing anyone else, or causing a major incident. We got through the entire day without having to abort a single errand -- quite an accomplishment for such an easily overwhelmed boy.

I am extremely proud. Of both of you! Just like I was proud when my soccer kid said "All done. All done!" and got into his car. He was done playing soccer and he sure let me know! I love seeing progress. I'm proud of every freaking thing my campers/soccer kids do. Especially today when one of my kids got water on his shirt and DIDN'T NEED IT CHANGED!

Charlie has had periods of doing as similar spin move, with and without stomping. It seemed to help him transition into the next thing he was doing.

He never bolted BUT he did overeat on Risperdal (seemed whatever mechanism told him 'you are full' wasn't operating as well as it might). And then we had SIBs or other sorts of thing; I think he just felt sick.

I'm glad that you can laugh at the Nutella, and not let the cranks get you down. Food bolting being an issue for Leo doesn't make the naked Nutella incident any less funny, and it's nice to see that the nattering nabobs of ABA negativism haven't killed your sense of humor.

And, I cannot believe you got Leelo to eat saag. Makes me think I need to try again with mine.

I am in AWE of all that Leo accomplished and how hard he must have worked to have each of those successes. I see it with my Nik though we are a long way from some of those successes right now.

I'm curious; when Leo has expended a lot of energy to keep himself "together" in such situations, do you see any sort of backlash or fall out in ensuing days? I only ask becasue we ARE seeing such and I didn't know if it was sort of marginally universal.

Thanks for sharing your day with us! Leo is adorable!! He has obviously come so far! He held it together thru a lot of transitions, and a huge variety of stimuli. Pronouns are huge, and I agree that when they start to get sneaky that does involve theory of mind. You are smart and you have really good people helping you, Leo is lucky to have such a fabulous support system. Anyone who would criticize is indeed a dick.

@Mir, Thanks! Leo is quite the fastidious boy, in some matters, e.g., he's my go-to guy for professional-grade lint trap cleaning. Adjusting his pants so his underwear doesn't peek over the top? Still working on that.

@Grace, aww. Always great to hear from you (and still so pleased to have finally met you IRL).

@anonymous, the nabobs are irritating, is all, and I have a temper. Not a great mix! Our local restaurant's saag is quite sweet, I think that helps. He won't touch my homemade version.

@Christine, it took years for him to tolerate the haircuts. Years and years of lollipops and crying and horrible half-done 'dos. But we persisted and so did he. I hope you have the same luck.

@Niksmom, Leo does have an experiential processing delay -- and that does sometimes manifest in weird/off behaviors later. But we're seeing this less and less; I think he's starting to integrate faster.

@Danny, well now, I'm just glad you dropped by. And I'm sure you know all about Badger-chewing.

I came here from Woulda Coulda today, and I want you to know that this:'perhaps instead of thinking, "Why is that kid behaving so strangely," you should ask yourself, "I wonder just how hard that kid is working."'has hit me hard. Thank you.

I don't even "know" you at all, not even in blogland - I just came over via Mir, but I must say, I feel very proud of both you and your son. What a great job, that you are both working so hard and helping him to develop behaviours that will allow him his best life :)

I enjoyed your post. I have a neice and nephew with aspergers and a quirky son. The exhaustion from making it all work is well understood. I hope your post is widely shared. It is well written and very informative. I hope you can look back at it in ten years and be even more proud of Leo's accomplishments.

Sounds like he's making great progress. My question is not intended to insult Leo (who is a very handsome boy) but I've noticed that a lot of kids with autism are significantly overweight. Is it a side effect of certain medications or is it because they became used to food being a reward during therapy? Or maybe it's because they don't get enough exercise? I know that plenty of NT kids are obese but the problem seems greater among the autistic and developmentally disabled.

I've often thought about that Worst Day post (you and the 3 kids in Costco I think it was) from a long while back. In fact, I talk about it to others as an example of how to perceive and how to interact. To think of this post in contrast to that one...it's simply amazing the work Leo has done! I know there's still so much that goes into this success, but wow, what a payoff! I'm working with a girl with severe-profound anxiety and just today she had several small steps forward. I'm still giddy about it and she's not even my kid. You must (and should) feel so happy and proud! Thank you for posting this; it made my day.

I love this post. I'd love to tape it to my shirt and make people read it when they see me and my son at the grocery store or wherever. I'm sure the clerks at our local Vons wonder why we start every weekday with a trip to their lightbulb aisle. I try to let people know what life is like with my kid, but I'm usually too tired for a thoughtful recap! I fear that even my closest friends still have no clue what it's like for our family to get through a day. Thanks for taking the time to write this. -Becky D

I am proud of him. What you write reminds me so much of how TH and I spend our days: holding hands or his hanging on my arm; eating Indian food; doing things in public that likely attract attention but that also involve huge successes; my constant admiration at how far he's come, how well he's doing; the haircut scenario--TH can't stand the hairwashing, in particular; and the fact that you just came out and called that "therapist" a dick. Yes!

I was with you all the way here. That child has obviously made huge progress and is working so hard. As is his mum.

You know, we moms, we special superpower moms, would know how hard you both are working. I still hold hands with Jack - deep pressure input helps organize him - and I'll be happy to be holding his hand for a long time. I was still a teen and holding my mom's hand. ;)

I am sorry it has taken me so long to respond to your wonderful comments -- I was a bit paralyzed by so much empathy and good will (processing takes me a while). But OMG thanks!

@Melissa -- that is the message I was hoping people would take home. That exact message. Because, really, we never know a stranger's story. (Unless we stalk them via their blog!)

@Heather, thank you for sharing the pride and spreading it around.

@lynnes, we front-load our days by priority, too -- and do the haircuts on the first day of the weekend, ideally, in case we need to go back the next day.

@My Kids' Mom, so you've got empathy to spare then. Good luck to you and your niece and nephew -- feel free to spread this post around their circles if you think it would be helpful.

@Anonymous, Leo's food compulsions are one of his behavioral last frontiers. Also eating is something he likes to do and can do independently. And his medication can cause an appetite increase. So there's three challenges. We're working on it. Some of his peers' compulsions are so intense that their parents have to lock up food/the refrigerator. We're not quite there yet. But - a lot of kids with autism are wiry. I suspect there are genetic reasons for both body types in autism, but at the moment we don't know.

@Anna - we had another Worst Day in Costco just this week! Mali fell and hurt herself and cried, Leo completely lost his shit and cried in response - then went into full tantrum mode. But thankfully we were mid-store and the cart wasn't full, so I picked Leo up and let him sit in the basket until he was able to chill. And he still handled it better than that other **shudder** Costco day. :)Congrats about the giddy.

@Becky, I'll get you some tape, so you can post it on your friends' doors as well. I'm so glad you liked this post.

@Rachel, it'll happen - I never thought Leo would achieve a tidy haircut. Part of this kind of parenting is the joy that comes with successes after we've conditioned ourselves to not expect them.

@Emily, it says "potty mouth" right there in the header. And I would really love to meet your TH.

@Brenda, I love holding all my kids' hands, for different reasons. And I hope they like it as long as you did, because I'm not letting go any time soon.

1. For any parent, those little milestones are such a proud moment. For a parent whose child is atypical, those milestones make your heart beam a 50,000 watts of light. And it's the same when you read about another spectrum kid doing those new things. Things that are so simple for us. Things we take for granted.

2. I'm learning that they just keep trading in one stim for another. Or they abandon a stim for awhile, and then go back to it at another time.

3. You made me so hungry for Suraj. God, I miss that place since moving away from the bay area. I also miss ABC, and for some odd reason Celia's. Granted, it's chain food, but "Mexican" food on the east coast is deplorable. I also miss that hole in the wall English pub near the convention center in San Mateo. The name escapes me.

I think you really put it well: none of us really know what any one else is going through, or how much hard work is behind it. My older son is mildly quirky, and I still remember the horrible things people would say to us.

Also, it is really hard to watch those pretty curls get cut off! My son favored a buzz cut for a year and it just made me miss those curls!

After re-reading this, I realize it makes us seem as though we discourage stimming entirely, which is not the case. As long-time readers know, Leo is generally fiddling with a Starbucks green straw in his mouth or hand at all times, for self-soothing. The spinning and stomping (which, one year later, have ceased) seemed, again, more of an OCD behavior, and definitely interfered with listening and functioning -- as opposed to the straw-stimming, which does not.